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Extreme Fatigue Support Group

I am so tired of being tired!! I know that fatigue is a symptom of crohn's but why? What is the reason or cause? I have had many blood tests from doctor visits to being admitted to the hospital (for crohn's, in general) and no one has ever said that I'm anemic, or anything like that. It makes me think I'm crazy...I have such low energy and can sleep just about anytime of the day. I want to be motivated to do things and enjoy life but it's so hard when I'm exhausted everyday...are there certain medications and/or treatments that would help me?
 
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Hi Rosie,
I am flaring since March minus 16 weeks steroids which work short, current on prednisone foam we can all guess where go.

I am mother 3 girls and have partner. I wish get energy just do something with out stop or finish girls bedroom.
 
I Know how you feel, my body just doesn't want to do anything and its hard trying to keep all my homework or go to those late night classes. I do have anemia and acid Reflux which doesn't help, but I think that same things that helped me will help you. Getting into a set routine helps, and truing to go to sleep the same time every night and waking up the same time every morning, and drinking water through out the day and staying supper!! Hydrated. It helps to try to walk in the mornings or some easy yoga then again later in the day. I was jogging for 30min each morning everyday and though it was hard I found that I had more energy in the day.... and just making sure that I was drink water and keeping everything as consistent at possible.... I took about a week before I noticed a difference but once you get into a habit and a set routine, it makes a hug difference..... and include pampering yourself even though its hard as a parent try to do something that brings you joy and relaxation everyday.....For me it was yoga or enjoying my favorite food, or even sunbathing. I hope that this helps.
 
The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!
 
Does anyone else still suffer from tiredness when they're in remission? I have had two operations in the last 10 months and the doctors think i am ok at the moment but i am unbelievably tired! So i was wondering if crohn's sufferers are tired just when they are flaring up or all the time haha :)
 
Can't speak for everybody but whether I'm flaring or not I'm extremely tired so can't say it's just a flaring issue. I was talking with a nurse friend and she suggested that maybe it's because my body just doesn't absorb the nutrients my body needs because of having crohn's...
 
Can't speak for everybody but whether I'm flaring or not I'm extremely tired so can't say it's just a flaring issue. I was talking with a nurse friend and she suggested that maybe it's because my body just doesn't absorb the nutrients my body needs because of having crohn's...
I think this can be the cause my fatigue, too.
 
While they were still working on a diagnosis, I went to see my GP because I was so tired. I was only awake 6-7 hours a day. And I had real trouble concentrating to even read. She sent off some blood for testing and suggested I see a psychiatrist to rule out depression. Well, I told her that neither my psychiatrist nor my therapist thought it was depression, and that in fact they'd said that the medication I was on should prevent that anyway...and that they had advised me to see my GP!!!!

She just said to come back when the bloodwork results were in. In the interim my GI diagnosed me with Crohn's, and ordered a series of iron infusions because I was severely anemic. I went in to see the GP the next day. She'd gotten the results. She was fawningly sympathetic, like she expected me to die tomorrow. "Oh, if it's CROHN'S no wonder you are feeling tired...and depressed."

LOL! I was moving away anyway, so I didn't bother with it.

But I did do the iron infusions. They did make me feel better, and not as weak, but the sleepy-fatigued-lack-of-concentration really didn't abate. So I really don't think it was just that.

I only worked for 6 weeks in the past year. That job was (supposedly) half-time, with a 1-1/2 hour commute each way. I'd come home, eat, walk the dog, and go to bed. Weekends were sleeeep. I finally got a clue and quit. And slept for a week.

So, IMO it wasn't anemia. My disease is limited to my colon, so absorption issues are not so likely.

The whole time, I was in remission. Still fatigued, but better.

BUT, I now feel hesitant to undertake anything biggish for fear I won't be up to it. That's the scary, worrisome part.

Never did find anything that helped with the fatigue, but I thought it was gradually getting more energetic. Recently I had another flare, and I'm back to Square One.

Lifestyle changes are all well and good, but what if you're doing all that already? Just seems like a waste to have so many people functioning at a low level when it's obvious we're not just lazy. Should I just suck it up and push on through (but then not much quality of life when the price is being asleep the rest of the time), or do as much as seems doable and hope it's temporary...when I'm now pretty sure that it's not?
 
I'm currently in a flare right now and I'm exhausted. I was so frustrated while I was hospitalized because I would tell the docs how tired I was and they would just shrug and look at me as if I were crazy. A nurse brought me a walker, because they assumed from my complaining that I couldn't walk. I had to explain to them that even if I used the walker, I would still walk like a zombie with my head down. In my brain and my entire body, I feel like a limp noodle...like I'm being held up by a string...it's hard to explain. :(

I should be catching up on homework and papers but I'm so freaking tired.

And I start work Dec 13th. I'm praying that I have half of my normal energy levels by then. There's no way I will be able to get to work by 7:30...stay until 5 and then drive through horrible traffic to get home. Ugh.

I've been taking vitamin d3 and calcium and that helps A LOT. Just a few weeks ago, I couldn't even hold my head up or even complete a sentence without getting winded.
 
I'm currently still in a flare of 6 months and I'm absolutely exhausted its horrible I can barely do anything because I'm so tired sometimes when someone is asking me to do something I fall asleep in the middle of them telling me what to do. There has been a time where I was on the bus on my way home and I fell asleep and missed my stop so I ended up in London :eek:.
 
The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....
 

UnXmas

Banned
I think I belong in this group. Does anyone else sometimes just want to cry when they know they have to go out somewhere when your body is desperate for sleep? Even social things that are supposed to be fun, they're such an effort.

And sometimes I get to the point where I can't even think straight, and I know I need to sleep, right now. And then I'll nap for an hour and feel so much better.

I can sleep anywhere, any time, no matter how noisy it is, how light it is, or what else is going on around me. The only time I couldn't sleep and wasn't terribly low on energy was on prednisone. I'm underweight, so my doctors think that's why I'm so tired, but they don't seem able to grasp it when I tell them I was just as tired when I was a healthy weight. I don't know the cause. It just comes with being ill.

Getting a good night's sleep is essential, otherwise I can't function the next day. I never stay up late unless I'm certain I will be able to nap loads the following day, though I like to get up early - I'm a natural early riser, a lark - so I go to bed early too, generally. Evenings are the worst time of day for me, energy-wise. It was terrible trying to have a social life when I was at uni; most students think the late in the evening, just when I'd be going to bed, is the time to begin social activities.

I find eating makes me sleepy, so I plan it so I can have a nap after a meal or eat right before bedtime. Also, for some reason in Winter, I find that keeping warm helps me wake up a bit. I think possibly because you lose energy when your body's struggling to heat itself. If a put a heater on or get a hot water bottle, it can help me stay more alert.
 
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UnXmas

Banned
Does anyone else still suffer from tiredness when they're in remission? I have had two operations in the last 10 months and the doctors think i am ok at the moment but i am unbelievably tired! So i was wondering if crohn's sufferers are tired just when they are flaring up or all the time haha :)
I do! How long ago was your last operation? A big operation can take months to recover from completely, it can take a lot out of you, so you may still be tired from that.
 
I think I belong in this group. Does anyone else sometimes just want to cry when they know they have to go out somewhere when your body is desperate for sleep? Even social things that are supposed to be fun, they're such an effort. QUOTE]

I hate getting that feeling when you just want to cry knowing that you have to go somewhere and do something, your so tired you brain and your body just goes ugh really do you have to go out. social evening I definitely agree they are an effort to get up and go to, in fact everyday life is an effort :lol: :)
 
Hey I'm newly diagnosed with Ulcerative Colitis, leading up to being diagnosed and even after I would sleep all day and all night only getting up to use the bathroom. My flat mates also think I'm lazy and claimed I'm over sleeping that's why I'm so tired. Ahh the joys of living with people that have no clue what you are going through. Right now I'm not tired only due to the fact I'm on prednisone.
 

UnXmas

Banned
Hey I'm newly diagnosed with Ulcerative Colitis, leading up to being diagnosed and even after I would sleep all day and all night only getting up to use the bathroom. My flat mates also think I'm lazy and claimed I'm over sleeping that's why I'm so tired. Ahh the joys of living with people that have no clue what you are going through. Right now I'm not tired only due to the fact I'm on prednisone.
Hi MarieClaire, welcome to the forum. It is hard when people don't understand our disease and mistake it for personality failings like being lazy. How much have you told your flatmates about your illness? Prednisone is great for boosting energy, even though it's a kind of fake energy in a way. But hopefully if prednisone can get your disease under control, you'll be feeling energetic for real soon.

Btw. you might want to post an introduction in the Your Story section here: http://www.crohnsforum.com/forumdisplay.php?f=5 It's a good way to introduce yourself to the forum, if you'd like to. :)
 
Even during remission I'm fatigued. I thought back to the last time I felt normal and, voila, it was when I was on Prednisone. So maybe "normal"isn't normal anymore. I'm very worried that the "fake" Prednisone energy is the only kind I'll have anymore.

Stepped down the Prednisone from 40 mg. to 30 mg. a couple of days ago, and slept 22:00-7:00, 9:00-6:00, which is fine right now, but not exactly conducive to having a life.
 
I would also like to jump in on this conversation. I had surgery in May of 2012 and have since experienced extreme fatigue. Never have I been sure if this was from the condition or my imagination.
 
I have also been experiencing extreme fatigue! More so than ever before! I have always had a energy problem. I am anemic, etc. It has gotten so bad I can't even keep my eyes open AT WORK! I have found myself nodding off and this used to never happen.
 
The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....
Same- I'm usually an avid reader, really having trouble reading more challenging books.It tires me really easily. Studied for and sat a 3 hour exam as part of an arts degree yesterday (history and politics), swatting was a nightmare and trying to write for three hours I found more difficult than before. Because I tire easily I've taken up graphic novels for a wind down- it keeps up my lit' habit and have found a new source of enjoyment.

I get up at 4.30 am for work and I'm kaputt by 10am when I'm usually on the go till well into the afternoon. Like a lot of others I'm tired of being tired.
 

UnXmas

Banned
I am getting extreme fatigue after eating solid food, and now on the NG, fed up :(
Eating makes me tired too. You know how you hear about people getting sleepy after eating a big meal? Like taking a nap after Christmas dinner or whatever. I seem to feel exhausted whenever I eat, even small amounts. I always get desperate for a lie down or nap after lunch, and I take advantage of this sleepiness in the evening, by eating right before I go to bed - it ensures I'll fall asleep pretty much as soon as my head touches the pillow. I hate it if I have to stay up after eating an evening snack. I guess digestion is hard work for me.
 
I am not a good person when I am lethargic, I ended up rowing with my husband and being truly foul :( he has been really good in all honesty, but I wish so much I had more energy!
 
I definitively belong here. My fatigue has really destroyed my life.... it started up when the Crohn's started... and hasn't let up. I've done every test under the sun... including sleep testing... no issues... just my body attacking itself and causing me to feel tired/sick all the time. Its definitely worse during flareups....right now :( but it persists afterwards... I am maybe at 30% energy level between flareups... and 5% energy level during.

a few things that might help between flareups (assuming you've done blood testing first)

1) don't let your sleep get below 8 hours. (9 is best) This may involve lifestyle changes
2) consider wakefullness drugs ( I use vyvanse... it doesn't give me energy... but keeps me from being a vegetable, and its well tolerated by me.
4) economize everything... don't ever over-exert yourself. You may get 'fake' boosts of energy for an hour... don't use that time to exert yourself.... it will come back to haunt you for the next couple days.

If you are having a flareup.... not much can be done.... the fatigue becomes so strong that its nearly impossible to manage... just do what you can to manage your life during this time.... let people know that things are unusually bad for you. Sleep sleep sleep!! For me... Prednisone helped... initially, almost like a miracle... but it never really got me into remission... it just kinda 'paused' the flareup.... but I may be immune to it now... not sure.
 
Even during remission I'm fatigued. I thought back to the last time I felt normal and, voila, it was when I was on Prednisone. So maybe "normal"isn't normal anymore. I'm very worried that the "fake" Prednisone energy is the only kind I'll have anymore.

Stepped down the Prednisone from 40 mg. to 30 mg. a couple of days ago, and slept 22:00-7:00, 9:00-6:00, which is fine right now, but not exactly conducive to having a life.


Wow.. you sound like me.... exactly.
 
This is definitely the group for me. Not only is it my mind that is absolutely knackered, but my whole muscle system and the bones seem to be so painful and exhausted. Moving them is just extremely hard work. But at least I see many of you understand this extreme fatigue. Sometimes I wonder if the high white count that I always have is causing this tiredness so that the body can relax and heal. But I'd so rather be doing something.
 
Don't know what to do with a 40 hour plus work week and a cleaning job while all I want to do is sleep!

Started seeing a GI doctor for the first time in 7 years after diagnosis of Crohn's Disease.

Take all the right natural supplements, foods, and sleep habits. Any type of help for this chronic tiredness??
 
None of us seem to have a cure, we're all suffering. The fatigue seems to be one of the worst symptoms of crohns. We are all suffering with you, Kauffman.
 
Don't know what to do with a 40 hour plus work week and a cleaning job while all I want to do is sleep!

Started seeing a GI doctor for the first time in 7 years after diagnosis of Crohn's Disease.

Take all the right natural supplements, foods, and sleep habits. Any type of help for this chronic tiredness??
Start with the complete blood check... as a precaution. I had my doctor test anything and everything... I even had a sleep test... but no dice.

If it turns out to just be the exhaustion we all experience from our bodies constantly attacking ourselves... it really becomes more about sleeping and rationing energy... its no fun at all.. but that's what I've had to do.

Eating well helps me mentally a bit..., but the fatigue just doesnt go away... it just always lingers... its only gone when Im on prednisone.
 
I was on steroids for 9 years solid many years ago. I had no fatigue issues as far as the whole mind and body is concerned. I cannot shift the complete lack of muscle energy. I have issues just doing anything physical and my mind is objecting to thinking correctly and at a normal speed to keep up with what people are saying to me. But I'm pleased I'm not the only one.
 
Newbie here, but not with respect to my Crohn's (30 years of dealing with it, since Age 12). I've read through everyone's personal experience, but mine seems to be somewhat different. I never seem to get enough restful sleep. My average is 4hrs 5mins and I wake up about 10 times per night, a couple times I get out of bed to urinate as I drink so much (no way to stop it due to dehydration issues). I have no large bowel, but do have an ileostomy that usually carries me through the night.

My issue is that I am falling asleep while driving now, which scares the heck out of me. When I get that feeling of extreme fatigue, I try pulling over, napping on the side of the road or walking around the car to get blood flowing. It seems to help sometime, however other times its a 5 minute fix and then I return to my previous state. The sad part is that I live in a small rural town and commute an hour+ in to work and an hour+ home each day. My days are long, as my alarm goes at 5:30am, I leave for work at 6:15am and usually get home between 5:30pm-6:00pm.

I have osteoporosis (thanks to 20 years of prednisone use) and take morphine to deal with constant discomfort in my spine. I find lately that things are getting worse as I have nights with net sleep of 2.5 - 3.5 hours now. I even took Friday off this week for fear of dying (worried I would fall asleep and run off the road or in to someone).

I'm now in somewhat what of a dilemma. If I talk to my doctor about my sleep issues and how its affecting me, I run the risk of losing my license, which in turn prevents me from working. If I don't tell her, I may end up losing both my life and someone else's if I get in an accident.

I'm in Ontario, Canada. I'm trying to decide what I should do, bearing also in mind I have a mortgage and car loan that needs to be paid. One option is to take sick leave and collect Employment Insurance, then I would have up to 15 weeks of paid leave to get my sleep issues sorted out. This is assuming my doctor provides the necessary note.

Am I alone in my fatigue issues or are their others that just don't sleep enough and that, combined with Crohn's nutritional issues is tough to deal with?

Thanks! :)
 
I know exactly how you feel. I can't seem to ever get enough sleep. I too live in a rural area. I am fighting to get disability because of the fatigue and concentration issues. I rarely drive, having my spouse or daughter take me where I need to go. I was telecommuting, but my company moved its HQs and is not permitting telecommuting anymore. It is a 2 1/2 hour drive each way. I have been without pay since November, adding more stress as I juggle payments with just spouse's pay (a fraction) of mine) and help from my kids as they can. Since I don't know the Canadian system, I can only commiserate and not advise. Just know you're not alone.
 

UnXmas

Banned
My issue is that I am falling asleep while driving now, which scares the heck out of me. When I get that feeling of extreme fatigue, I try pulling over, napping on the side of the road or walking around the car to get blood flowing. It seems to help sometime, however other times its a 5 minute fix and then I return to my previous state. The sad part is that I live in a small rural town and commute an hour+ in to work and an hour+ home each day. My days are long, as my alarm goes at 5:30am, I leave for work at 6:15am and usually get home between 5:30pm-6:00pm.

I have osteoporosis (thanks to 20 years of prednisone use) and take morphine to deal with constant discomfort in my spine. I find lately that things are getting worse as I have nights with net sleep of 2.5 - 3.5 hours now. I even took Friday off this week for fear of dying (worried I would fall asleep and run off the road or in to someone).


I'm now in somewhat what of a dilemma. If I talk to my doctor about my sleep issues and how its affecting me, I run the risk of losing my license, which in turn prevents me from working. If I don't tell her, I may end up losing both my life and someone else's if I get in an accident.

I'm in Ontario, Canada. I'm trying to decide what I should do, bearing also in mind I have a mortgage and car loan that needs to be paid. One option is to take sick leave and collect Employment Insurance, then I would have up to 15 weeks of paid leave to get my sleep issues sorted out. This is assuming my doctor provides the necessary note.

Am I alone in my fatigue issues or are their others that just don't sleep enough and that, combined with Crohn's nutritional issues is tough to deal with?

Thanks! :)
I think you know that the short-term solution has to be to stop driving. Whatever financial problems it brings, they will not come close to being as bad as you will feel if someone else is injured or killed if you fall asleep while driving.

I know it's not as simple as that - the fact that it's possible you may continue driving without hurting yourself or anyone else means that in reality it's not a clear-cut choice.

Maybe you should investigate with a doctor whether something else can be done to manage your discomfort and pain. You won't necessarily have to broach the driving issue right away, just explain the pain and the resulting insomnia.

You have two options to approach this, though you can try both: tackle the pain or try to sleep through the pain.

There are some great meds to help you sleep. Usually I'm the opposite - I can sleep anytime, anywhere, but prednisone, when I was on it, caused me awful insomnia (though not with any tiredness - I had more energy than at any other time since being sick when I was on pred). After some unsuccessful attempts at trying out sleep meds, my doctor prescribed me Amitriptyline which gave me the best nights' sleeps I ever had, even while still taking the prednisone, and it got rid of the restlessness pred caused me too. Amitriptyline helps me so much with sleeping through most pain and discomfort and I continue taking it now I'm no longer on pred - and it's still helping me sleep, I've not become tolerant to it.

There are many options for meds for sleep, if you talk to your doctor you may find something that helps you, and it may be that it is easier to find a solution this way than to try to find ways of controlling the pain itself.

You really should stop driving if you can't trust yourself - even if you're not actually falling asleep, if you're tired your reactions will be off and your timing slower.
 
I also have these issues. I am trying Melatonin as a sleep aid. I also read somewhere many years ago that it does help something to do with Crohns. I must reinvestigate that. But I'm sleeping more fitfully when I do sleep.

I too live in rural areas and find a long drive incredibly tiresome and muscle fatigue and joint issues also mean I take my time on any journey and take breaks whenever I need to. I am wondering if moving nearer would compensate for less use of petrol.
 
I think my concern about taking any medications to aid in my sleep is I don't want to miss getting up when I really need to (bathroom). Before I got my ostomy, I never slept well either, but that was because I was going to the bathroom 30+ times a day. I did not want to force myself to sleep as I know the results would have been messy.

I take hydromorphone for the chronic pain, which I have long grown use to, in that there in no fuzzy head effect. I can't take any more than I take now, as my digestive system slows down/stops if I do , which just leads to pain.

I have to explore my options with respect to employment insurance, as its hard to just not work and not have any income coming in. Despite being at the same job for 16 years, it might be time to change. The hour+ commute just isn't working for me anymore. I can't move closer, as I a partner and her two kids to consider and its not fair to uproot them from all their friends and family. She does work, so fortunately she had an income, but we also carry two mortgages so mine is needed as well.
 
I hate to read all these stories of people being so tired - fatigued!! I have felt like such a slacker - lazy bum for so long thinking it's just in my head. Sorry we have this to deal with on top of Crohn's!! I wish there was a better word to explain the fatigue..... horrible mental & physical exhaustion.... but sometimes you're so tired you can't even sleep. I feel your group's pain!! makes me feel LESS CRAZY! The Crohn's "related" issues are as bad as the disease itself!!
 
Do many people also suffer from depression, as lets face it, life could be better. I do, thus my reason for asking. I never felt my depression caused fatigue, but it may contribute to my body aches. It seems ok, but I guess asking a crazy person if they are crazy, doesn't always get the true answer ;) I take Cymbalta to help me witn this.
 
Do many people also suffer from depression, as lets face it, life could be better. I do, thus my reason for asking. I never felt my depression caused fatigue, but it may contribute to my body aches. It seems ok, but I guess asking a crazy person if they are crazy, doesn't always get the true answer ;) I take Cymbalta to help me witn this.
Depression and anxiety can make crohn's worse. Even the most skeptic doctors will tell you to manage your emotions.. and change your lifestyle as best you can, to cope with it... and will even suggest anti-depressants and anti-anxiety medication for short term relief.

And yes... stress and depression can cause fatigue... even if you don't have Crohn's.

My sleep therapist even said they can cause sleep dissorders.

But, on the other hand.... even when I am as happy and relaxed as can be (which is rare)... my fatigue still doesnt go away... But I have DEFINITELY noticed a pattern between crohns flareups and stress.
 
I can't even survive my day without a nap anymore! It is so hard to balance
Crohn's and life. I have had Crohn's all my adult life and it affects everything. In order to go to school I have to work, but it's not easy with Crohn's. Setting new limits for myself has been especially challenging because I don't want to give anything up, but also don't want to feel icky all the time.
 
This 40 hour a week job is just not for people who have crohns. It crazy that all your energy goes to your work and then you just sleep when you get home and try to eat something and be like zombie rest of the evening. I go to bed 9pm every night and sleep like a baby to 8 am. And i am still soo exhausted. :(
 
I hate to read all these stories of people being so tired - fatigued!! I have felt like such a slacker - lazy bum for so long thinking it's just in my head. Sorry we have this to deal with on top of Crohn's!! I wish there was a better word to explain the fatigue..... horrible mental & physical exhaustion.... but sometimes you're so tired you can't even sleep. I feel your group's pain!! makes me feel LESS CRAZY! The Crohn's "related" issues are as bad as the disease itself!!
I tried to explain that to my doc... and he didn't seem to understand. If I had the choice between the stomach pain and the fatigue... I'd pick the pain in a second. I can manage pain and frequent bathroom visits... but fatigue is a complete and total life-changer.... and what's worse... its not easy to explain to a healthy person.

40 hour/week jobs... I guess that depends on the severity of the fatigue and the type of job.

I used to teach... I can't anymore, since I can't stand for any amount of time. Most of my work I do is done at home lying on the couch... and only during strategic periods of time when I am not vegetating.
 
I totally identify with all of you. This is the only place I actually get some genuine understanding. I've got the flu on top of everything too. That's what I get for a visit to the GP surgery! Soooo exhausted.
 

nogutsnoglory

Moderator
Just getting around to joining this group. I suffer from extreme fatigue and dizziness and it's very disabling. I mostly can't go out and when I do it's scary and I often cancel plans. It's very depressing but when you feel like collapsing, going out is not a good idea. It doesn't matter what I eat, how much I sleep, I never feel refreshed. A good day is one where I'm exhausted but have a tiny bit of energy to go out.
 
I have been out of remission for about three years. I have had varying degrees of symptoms in that time. Fatigue has been a constant though. I work retail- its hard physical work. My husband is not so patient, his answer is don't work so hard at work so I can get all "my" stuff done at home! Easy for him to say! I just do the best I can.

I have had my Vit D and B checked- I take 50,000 of Vit D a day to get my number from 18 to 89. MY B is normal at 450, Thyroid normal. I still feel like I am dragging my way through the day.
I would dearly love to give up CD so I could feel "normal"!

Any suggestions? Anything I may be over looking?



Lauren
 
Oh wow I'm so glad I read this, I have posted in another thread.

My panic has been difficulty reading at times the words will just not go in, the fatigue too its extraordinary and I can just drop asleep at the drop of a hat. Today I nearly fell asleep in a meeting and was yawning my head off. I'm so exhausted. I have difficulty concentrating then suddenly I sort of pick up, my head clears and then it clouds over.

My lower abdomen has been upset a bit, especially passing mucus as I have a stoma. I was told that my body does not absorb nutrients as well and I could feel tired. Now there is tired and there is tired, and when I feel exhausted I become upset and can't believe how tired I do feel. I still don't understand a flare up at all. My hubby has noticed I've become very forgetful and it feels like my head is full of nothing like cotton wool. Then there are days I'm back to normal and switched on. It's all quite weird.
 
Fatigue is a constant with me. Maybe there needs to be some proper focused research into dealing with this and then maybe the crohn's itself would not be so bad or exhausting to deal with.

I am exactly the same as nogutsnoglory. What a horrible life it is. I always end up so disappointed with my day because doing something takes so much physical effort and muscle pain, and yes the nausea means we can't even get one chore done without having a sit down break. The worst of course is that people just don't understand what we are actually experiencing and having to go through and live with.

One day we will all be better and then maybe we can laugh at the bad old days.

Keep cheerful, keep reading the joke thread and the officially funny pictures thread. If you can't be healthy have a good sense of humour available to you and others.
 
Hi, I have only been diagnosed with Crohn's for 3 weeks now but the tiredness is definitely getting to me.

I have to commute by train and bus in the morning in order to get to college but by the time I get there I feel like I could collapse, curl up in a ball and sleep until home time! Let alone try and concentrate on my work!

I am yet to really get my head around crohns and find a routine but I want to look into doing some yoga to try and get me going in the mornings.

Does anyone have opinions on whether a change in diet would make a difference to how tired we get?

Even through all the pains I have been getting, I feel really pathetic being so tired all the time! Im only 19 years old and I can literally fall asleep anywhere and trying to find the motivation to do anything at the moment is becoming harder and harder!

Reading this support group is giving some encouragement though that im not going through this totally alone:)
 
tiredness is from a few possible causes-

iron intake- not all supp are same quality try a few.
b12 status- if you take a supplement take 2 forms metyhylcobalamin and adenosylcobalamin
oxidative stress- try green tea, coffee, vitamin e supplements, chocolate, high antioxidant fruits. i wont explain how here, but yogurt that is fermented for 24 hours get also help restore energy, and soluble fiber in take to produce short chain fattys acids as crohn's patient are low due to abnormal fermentation but our intestinal bacteria.
 

UnXmas

Banned
Hi, I have only been diagnosed with Crohn's for 3 weeks now but the tiredness is definitely getting to me.

I have to commute by train and bus in the morning in order to get to college but by the time I get there I feel like I could collapse, curl up in a ball and sleep until home time! Let alone try and concentrate on my work!

I am yet to really get my head around crohns and find a routine but I want to look into doing some yoga to try and get me going in the mornings.

Does anyone have opinions on whether a change in diet would make a difference to how tired we get?

Even through all the pains I have been getting, I feel really pathetic being so tired all the time! Im only 19 years old and I can literally fall asleep anywhere and trying to find the motivation to do anything at the moment is becoming harder and harder!

Reading this support group is giving some encouragement though that im not going through this totally alone:)
I don't find that what I eat makes a difference. However, if you are not eating enough and are underweight or losing weight, that could certainly make you more tired. Many people with Crohn's can end up with low iron levels, which is a cause of tiredness. Low iron can't always be helped with diet if your absorbtion isn't good - if your blood tests do indicate low iron you might benefit from a supplement.
 
I am so tired all the time. Don't know if it's the disease or the meds. I have 3 teenagers and a great husband so things are pretty much taken care of around my home but I don't want to live in bed and miss out on things at my kids schools.

I take : Imuran 50 mg daily and Entocort 3 mg x 3 daily
 
I have 4 daughters (ages 13, 9, 5 and 5 (twins)) and work full time as a nurse. Because of my recent diagnosis and 2 trips to the hospital on top of being sick and seeing my GI, I've missed a bit of work lately. My boss is threatening to "put me in a different position" instead of my office job that I have. She wants to move me out to work on the floor, which means I'd be on my feet more. (She knows this is difficult for me right now because of all my swelling not only in my abd. but my lower extremities too due to my 40mg of Prednisone daily.) I think she's doing this because she's angry and she thinks this will make me quit. Even though I'm not able to go to work as much as I want/need to, I still get more work done than the 2 other people that have the same "job description" as me. I'm so frustrated with not feeling well and then having to put up with this all the time too. I'm wondering about doing something that I can work at home instead, or maybe even trying to get on disability (althought I REALLY don't want to do that!).
Does anyone else have problems with keeping up when it comes to work? I would love to hear what other people have done in similar situations.
 
Zeppy and Jd,
I know how you feel. In a way it's easier for me as I never had children. I just wouldn't with this health. Work is nigh impossible as I am so depleted of energy and I'm on a liquid feed through a pump for 20 hours a day. Living anything of a normal life seems way out of my league and leaves me quite disappointed in life in general. Sometimes I wish I just had people at home to chat to, on the other hand though, as you both probably know, it's hard work just keeping up focus and concentration on anything, even a loved one.
Jd, I'm on disability. I hate to say it but employers don't want those with lifelong illnesses. Sounds to me though, you are doing a good job.
 
Thank you Spooky. I try to keep up. Luckily I'm fairly fast and accurate at what I do, so when I am at work I do a good job. I'm supposed to be full time (40 hours/week), but I haven't been able to work a 40 hour week since at least November 2013. My boyfriend lives with my children and me, but he also works and his is a physical job so he is tired at the end of the day too. The only reason I am against disability right now is because 1) I don't think we could financially survive on it and 2) I also suffer from bipolar disorder and my psychiatrist thinks that it's good for me to be at work because that's how I get out of the house and in a social situation. Unfortunately though my Crohn's diagnosis has seemed to taken a big toll on my bipolar diagnosis and I am having more and more "bad" days mentally.
But there I go rambling... Thanks for the welcome and the encouragement!
 
The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!
This doesn't help, but I know EXACTLY how you feel. Other people really don't get it!

jill
 
JD, I am quite shocked that you are trying to hold it together. It's really sad you have to work a 40 hour week. I'm not awake much more than that, let alone care for kids, be a mum to them and your boyfriend. In a way I think they might be the biggest stabilising factor in your life. But, my, that's really pushing it with what you have wrong. I am so sorry for you. I sincerely hope both illnesses heal soon.
 
Spooky - "Holding it together" seems to be what I am struggling to do most days. Not only do I feel tired a lot but I also haven't really gone into remission since being diagnosed and put in the hospital the first time in December, so I feel very unaccomplished by the end of the day/week/whatever... I know I get very "short" with my kids and my boyfriend and other family members because of my fatigue and pain too. Then I feel really bad because I know it's not their fault I feel so bad either. It's so hard! I'm sorry to be venting so much. I litterally just found this site today and I'm just so excited to find other people who "get me"! :)
 
Hang in there jd. Fellow Crohns friends realize the frustration from those whom think we are imagining our fatigue and pain. But eventually those around you will provide support. My fatigue improved once my iron levels improved and B12 numbers rose through supplements and injections. Keep in touch. Take care.
 
Actually, iron is one supplement I don't take. I know the tablet form feels like it's burning a hole in my stomach but I think these days its possible to get it in liquid form. I will give that one a go.
 

UnXmas

Banned
Actually, iron is one supplement I don't take. I know the tablet form feels like it's burning a hole in my stomach but I think these days its possible to get it in liquid form. I will give that one a go.
I had similar problems, even vitamin pills without iron upset my stomach. I believe you can get iron injections as an alternative.
 
Hi spooky, like many folks, irons pills were very disruptive. Can not take them. So I took Iron Chewables. They were much better. But still not enough absorption . So currently I am in the middle of 10 iron infusions. It's a pain, but this the only way to get iron up,,,and provide me with energy. Hope this helps
 
I have had some luck with supplements like Propolis, bee pollen. And keeping up the energy vitamins, like C, D. B series. Also, bone broth helps. I do think it is a matter of the damaged intestinal walls not absorbing anything, so the more you can get into the blood the better. Liquid vitamins are not as important as the absorption catalysts, like fatty compounds. Some are water and some are fat or oil items. I can tell I am getting nowhere when I'm still tired and my urine is dark and smells like the vitamins I'm trying to absorb. Shots really help, get the B-vitamin shots, they do wonders. It actually helps to do anything you can to repair the walls of the intestines, and be aware that you probably don't produce the right enzymes any longer. Also try taking Mucinex, or guafinesin, about 800 mg per day. It is hard on the tummy, so take it with a meal. My neurologist is not sure why it works, but it does. Try taking enzymes to help break down the foods, and don't hesitate to try baby food or liquid nutrition supplements.
 
Interesting. Bee Pollen. Anyone played around with Bee Pollen?? I've always thought of trying it but always hesitated. Any thoughts friends??? As always, this site allows me to give input and receive it. You friends give me MORE than My GI Dr. Bee pollen anyone??
 
Always tired. I was once active and always out n'n about, and now I'm having a hard time just getting from the couch to my bed…

I went grocery shopping today and had to have a cart (though only need a few things) just to support me from not falling over.

I'm a 22 year old female! Being inactive is making me miserable but I just don't have the energy :(

(Aslo my resting heart rate is sitting around 116…ugh)
 

nogutsnoglory

Moderator
I have been trying D-Ribose to try to gain energy. It has shown promise in small studies. Day 3 and no change yet. I'm not too optimistic after trying everything but what the hell.
 
I am feeling drained today! I've been working all week and filling in for someone else while also trying to do my job. My house is a horrible mess! It looks like a tornado has gone through it. I don't think I've done any laundry since last weekend. And I haven't been to the grocery store at all this week. I feel horrible that I'm not being a very good mother/girlfriend by neglecting things at home. But it seems like if I want to have the energy to work, I don't have anything left when I come home. Oh, and I work tomorrow (which means 6 day work week with 1 day off before I go back). Ugh... Thanks for letting me vent!
 
Well, you impress the heck out of me!

The flylady.com website does a good job with the "exhaustion + housework" combination, breaking things down into targeted spurts of 15 minutes. And reminding you to take care of yourself first. The time when you've got absolutely no time to rest is the time that you most need to.

Hang in there.
 
the fatigue is ridiculous! it's worse when as a manager at my job I have to cover a callout and work an 18 hour shift...when a 9 is tough enough sometimes...and they wonder why I get the way I do sometimes.
 
hi,
i can't seem to stay awake! my sleeping patterns all over the place. i usually sleep at around 6am waking up at around 1 in the afternoon and when i try to do an all nighter to sort it out i can barely make it past 9am and then make it even worse! the fatigue is making it harder to concentrate and is therefore having a huge impact on my work which in turn is increasing stress.
any advice?!
 

UnXmas

Banned
hi,
i can't seem to stay awake! my sleeping patterns all over the place. i usually sleep at around 6am waking up at around 1 in the afternoon and when i try to do an all nighter to sort it out i can barely make it past 9am and then make it even worse! the fatigue is making it harder to concentrate and is therefore having a huge impact on my work which in turn is increasing stress.
any advice?!
A good sleep routine is so important! There have been a couple of times in my life where my sleep has been so messed up, and it makes such a difference to how I feel mentally and physically. I sleep so well now and I'm careful to make sure it stays that way!

Staying up all night like you've tried is one option, if you can do it. Have you tried staying awake through the night (as you currently are) then making sure you're outside somewhere throughout the day to ensure as little sleep as possible until you make it through to the evening? It will be an awful day (and definitely not a day for doing anything requiring attention - no driving!) but if you can hold out you should sleep through the night.

What helped me so much with sleep has been taking Amitriptyline. I had been sleeping well, but then I had to take prednisone, which caused severe insomnia - it was awful. My doctor prescribed Amitriptyline which cured it immediately. And I don't seem to have built up any tolerance to it - it still knocks me out, well over a year later. I guess you could try taking a strong sleep med in the evening, something that will make you sleep even if you haven't been awake for a full day.

So perhaps you could try something like the following: fall asleep around 6am as you're currently doing. Try and get up earlier than 1pm if you can, so you haven't had much sleep. Then the following evening, rather than staying awake until 6am, take a strong sleep med in the evening at a reasonable bed-time. Amitriptyline in a high enough dose should cause you to sleep when you wouldn't naturally be tired. There may well be other sleep meds - different ones work for different people - I'm using Amitriptyline as an example because that's what causes sleep to come for me. It helps me sleep through pain and discomfort, and if it works for you it should help you sleep even when you otherwise would not be tired.

Once you are in a good routine, don't break it! Make sure you don't give in to temptations to lie in in the morning. Make yourself get up early to stand the best chance of getting to sleep at a good time in the evening.
 
I was doing so well this morning! Travelled in to London by train and bus for college and have managed to get on with my work really well and get a decent amount done for a change. But then BAM! I suddenly feel like Im gonna fall asleep on the table! I have got too much to be doing to stop but my concentration is disappearing!

I have stopped for a break, eaten and had a drink but somehow I don't think I'm going to get much more done today! agh its so annoying! :(
 

nogutsnoglory

Moderator
Natasha I have episodes like that too. What is that? I feel better and embark on a task and out if nowhere I feel like my legs are going to cave on me, I get weak and my body aches and I want to just lie down.
 
I know its so annoying! Im stopping for lunch soon so I'm hoping I will have more energy after but I doubt it! Its stressing me out thinking that I have still got a few more hours here and then got an hours journey home! Im so gonna fall asleep on the train! :(
 
I take Remicade and anywhere from 1-4 weeks before my treatments I suffer from fatigue. Two days after my infusion, I get out of bed and immediately notice that the "fog" is gone. It feels like a miracle every eight weeks.
 
Yes, if you click on it in my post, there is a proper explanation, but basically a medication that gets administered through an IV, for me every 8 weeks. It is used for moderate to severe Crohns - I have it in small bowel and had a perianal fistula and abscess when I was diagnosed in Sept 2012.
 
I have recently started magnesium, vitamin B, and iron supplements as my levels were low. I am surprised that I can tolerate iron supplements as I am very sensitive to those type of things. The one I take is Mason Natural Sugar Free Ferrous Sulfate.
 
I need to join this support group. I can hardly stay awake--I actually need ADHD medicine to keep me from falling to sleep, which does not always work.
 
yes, i just got soluble iron and will start taking it today. Must say, it's a bit expensive but i want to give it a try as i cannot cope with the extreme fatigue. Life is a disappointment when you haven't got the energy to complete any one task, let alone live normally.
 
I need to join this support group. I can hardly stay awake--I actually need ADHD medicine to keep me from falling to sleep, which does not always work.
This is interesting, I am on ADHD meds for the same reason. I can't stay awake, even to drive sometimes. I'm glad I'm not the only one~
jill
 
I have had a mild case of Crohn's since 1998. In 2009, I developed a tingling in my feet and fatigue with no other symptoms and no flare ups. I spent the next 3 years trying to determine the cause. No doctor said it could be Crohn's. Last year, I felt much, much better. I didn't know how much better until the beginning of this year when the tingling and fatigue set in again. The fatigue is more of a light-headed feeling, a little dizziness, and a foggy head. If I get 8 hours sleep, I am not sleepy during the day and I can stay up until 1 or 2 in the morning. I am not on any medication for the Crohn's as I find it does not prevent the one or two flare ups that I may have a year. If I feel a pain, I can take a couple of prednisone to stop it. Has any one else with mild Crohn's experienced this and what supplements or treatment have helped?
 
My sleeping patterns are no patterns at all. Most nights, I fall asleep around 9:30, wake up about midnight, fall back to sleep at 4:30 a.m. or 5 a.m., before waking for work. Sometimes I am so tired I stay in and sleep all day. I've tried meds for depression and insomnia, get B 12 injections and take a prescribed Vitamin D, but I just stay tired. I hate it. I've had Crohn's since 2004.
 
I have episodes sat at work all fine then wham I just want to sleep. I work full time five days a week, my weekends consist of waking up, taking dog out, coming home go to bed and sleep most of the day. Occasionally I have really good days and I so miss them! I am struggling also with sever sinus problems, very bad too. Waking early, blocked nose, sneezing and the pain in my forehead, temples and neck can be awful
 
yes, i just got soluble iron and will start taking it today. Must say, it's a bit expensive but i want to give it a try as i cannot cope with the extreme fatigue. Life is a disappointment when you haven't got the energy to complete any one task, let alone live normally.
Spooky, will you keep me posted on how the soluble iron works for you. I am curious if it's easier on the tummy too.
Thanks!
Jill
 
Hi All!

I too suffer from extreme fatigue. Mine comes with muscle and deep bone pain at times. Today it's extreme fatigue, pain, and nausea.

I was DX w/CD in 2010, and since there's been one thing after another. Now I'm on tons of meds and the Dr.'s say that can contribute to the fatigue as well.

Some items to think about:
Hypothyroidism: (and thyroid nodules) Taking Levothyroxine (helps with fatigue)
Low Vit-B12: I give myself monthly injections (helps with the fatigue)
Low Vit-D: Rx replacement/supplements
Methotrexate: Newly taking - was told it can cause serious fatigue as well

It would be nice if there were more awareness of the physical effects associated with UC/CD and the other manifestations it can bring once the IBD is active in your body. I've read other posts and it upsets me too that no one seems to understand what you go through unless they have UC/CD, or some other inflammatory disease and at least somewhat understand. I have more Dr.'s than I ever imagined I would and it's hard to explain why you have to go to the Dr.'s all the time.. and there goes your sick time, and vacation times from work. But it's a daily struggle. And as far as remission.. yea ok. remission is great, however, IMO that doesn't mean you're temporarily healed! The side effects still come and go as they please.. as do flares.

My Endo had me take labs recently that had to do with the pituitary gland, and mentioned if certain levels are off it can also cause the fatigue. So, I'll wait and see how this turns out.

Hope everyone is doing great today! And hope one day that there is a cure! <- for CD and the other Immunity issues it activated..

Hugs to all
Monica
 
I have episodes sat at work all fine then wham I just want to sleep. I work full time five days a week, my weekends consist of waking up, taking dog out, coming home go to bed and sleep most of the day. Occasionally I have really good days and I so miss them! I am struggling also with sever sinus problems, very bad too. Waking early, blocked nose, sneezing and the pain in my forehead, temples and neck can be awful
Hi BabyPink,
I work 5dys/wk as well. the fatigue is brutal. I also have allergy problems. I was taking Clarinex and my Dr. recently switched me to Xyzal, it seems to work much better. As for the pain in my forehead, temples.. etc.. I thought it was all allergy related, or working at the computer all day, and no big deal. But my Endo had me run some recent tests, and apparently the pituitary gland - can cause those too if not functioning just right. She said if you've ever been in a bad car accident, accidently hit your head, or played rough sports as a child - you could potentially have injured something.. Here's one article I found online with a tad bit of info. http://www.womensinternational.com/newsletter/article_braininjury.html
And here are a few tests the Dr. had me run: I'm really unsure of what they are just yet.. I literally took them the other day.
Insulin Like Growth Factor I (IGF-1)
Estradiol, Level
Follicle Stimulating Hormone
Luteinizing Hormone Serum
Cortisol AM Serum
Prolactin
Hemoglobin A1C
I hope this helps some. And hope you start feeling better soon!
Kindest Regards,
Monica
 
@Jilly, i certainly will let you know about the liquid iron. So far i haven't got the burning hole in stomach feeling. As for fatigue, well no improvement yet, but it has only been less than a week.

@girly, i have also had two head injuries so the article is very informative with me suffering many of the listed side effects of the injury. So i think i might get that progesterone on the go.

Thanks.
 
Dangit... Im going back into the severe fatigue mode again.... not only does it make me a zombie... but it makes me want to stay away from anything and everything. I literally can't even open my emails because it involves contact with the outside world... I am wasting nearly all my hours on the couch again.

Outa frustration, I took huge amounts of coffee this morning... what a stupid move that was. But I always seem to do this when I hit rock bottom.
 
Yes, the body seems to know to beg you to try and give it energy, or any kind of boost. Unfortunately, with Crohn's it just doesn't help much. I feel my life has been wasted. I have realised i'm not so alone now i have this site with all the understanding people here. We aren't alone and we are all awaiting that amazing cure.

There is no forcing the body to find energy when you're that fatigued. It just doesn't happen. I have got to collapsing point on so many occasions. It's not worth forcing yourself.
 
Hey their! I had a hard time telling my husband a few years ago .I'm tired. I had to tell my GI doctor. To tell him. She's tired because of the Crohns. Fatigue . So he had to deal with it.
 
Yes, the body seems to know to beg you to try and give it energy, or any kind of boost. Unfortunately, with Crohn's it just doesn't help much. I feel my life has been wasted. I have realised i'm not so alone now i have this site with all the understanding people here. We aren't alone and we are all awaiting that amazing cure.

There is no forcing the body to find energy when you're that fatigued. It just doesn't happen. I have got to collapsing point on so many occasions. It's not worth forcing yourself.

Yes, I couldnt have said it better myself. There is just no way to force your body to get more energy... and once you go over the limit (which is very low for us)... your body punishes you big time.

I did find something interesting that may help others... I tend to expend a lot of energy in the first 2 hours of the day... since getting breakfast, kids ready etc. I almost don't notice it at times, a lot of it is just habits... so, especially during flareups... I am useless by 10:00 am.

But the last 2 morning, I have made a point to be as economical as possible. I've prepared things the night before. I have dropped off my daughter instead of walking her to class (she was ready for that anyway). I have minimized standing, and been really conscientious about moving.

And the results are quite amazing. I am not 'full of energy' or anything, but I am not a zombie at 10:00am.... I can do basic sit-down work. I still have to be economical for the whole day... but I put more emphasis on those first two hours it pays off for me.
 
Hamster, it's great someone else is just like me. I always said I am fit for two hours and then, yes, it's definitely zombified. I hadn't realised that others are like this, just the two hours. I think we are very, very much similar with our fatigue.
 
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